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PRODID:-//CdLS Foundation - ECPv6.15.18//NONSGML v1.0//EN
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METHOD:PUBLISH
X-WR-CALNAME:CdLS Foundation
X-ORIGINAL-URL:https://www.cdlsusa.org
X-WR-CALDESC:Events for CdLS Foundation
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20180101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190216
DTEND;VALUE=DATE:20190217
DTSTAMP:20260405T175538
CREATED:20181022T192746Z
LAST-MODIFIED:20190124T233800Z
UID:1318-1550275200-1550361599@www.cdlsusa.org
SUMMARY:Southeast Region Family Gathering
DESCRIPTION:Save the date for the Southeast Region Family Gathering!  Hosted by Angie Young and being held in Fort Myers\, FL.  Join families in the southeast region to spend time together talking\, sharing stories\, laughing\, and learning from one another. The connections made between parents\, grandparents\, children\, relatives\, and professionals can last a lifetime. Who better to talk about what it’s like to experience the sleepless nights\, the never ending tests and procedures and the concerns that a diagnosis of CdLS can bring\, than another parent who also has a child with the syndrome. \nLakes Regional Park information
URL:https://www.cdlsusa.org/event/southeast-region-family-gathering/
LOCATION:Lakes Regional Park\, 7330 Gladious Drive\, Fort Myers\, FL\, 33907
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/Group2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190309T110000
DTEND;TZID=UTC:20190309T140000
DTSTAMP:20260405T175538
CREATED:20190115T204946Z
LAST-MODIFIED:20190125T002343Z
UID:1995-1552129200-1552140000@www.cdlsusa.org
SUMMARY:Southwest Region Family Gathering
DESCRIPTION:Hosted by Courtney Hegarty\, AZ Regional Coordinator
URL:https://www.cdlsusa.org/event/southwest-region-family-gathering/
LOCATION:Red Mountain Park\, 7745 E Brown Rd\, Mesa\, AZ\, 85207\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/01/Savannah-Grazier-Briley-Svee-with-moms.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190313
DTEND;VALUE=DATE:20190314
DTSTAMP:20260405T175538
CREATED:20181220T201502Z
LAST-MODIFIED:20190125T003004Z
UID:1932-1552435200-1552521599@www.cdlsusa.org
SUMMARY:CdLS Clinic at Shriner’s Hospital in Salt Lake City\, Utah
DESCRIPTION:(Serving individuals with CdLS who are 18 years old and younger) \nFor more information contact Lynn Audette at LAudette@CdLSusa.org
URL:https://www.cdlsusa.org/event/cdls-clinic-at-shriners-hospital-in-salt-lake-city-utah/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/12/ewc_CHOPCDLS112013001470.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190317
DTEND;VALUE=DATE:20190318
DTSTAMP:20260405T175538
CREATED:20181026T002824Z
LAST-MODIFIED:20181128T013256Z
UID:1609-1552780800-1552867199@www.cdlsusa.org
SUMMARY:2019 United Airlines NYC Half Marathon
DESCRIPTION:Many runners say that running has changed their lives. \nTeam CdLS runners say that they have changed the lives of others.\nKick off the running season\nwith the Cornelia de Lange Syndrome (CdLS) Foundation\nat the United Airlines NYC Half Marathon\nSunday\, March 17\, 2019 \nThe CdLS Foundation will be there with you every step of the way\, providing you with:\n• Guaranteed race entry\n• An official Team CdLS singlet\n• Team CdLS Swag Bag\n• Pre-Race Luncheon\n• Weekly training guides sent via email\n• Fundraising tools including your own personalized web page through CrowdRise.com\n• Supportive teammates who may turn into lifelong friends\n• The satisfaction of knowing you’re helping individuals nationwide\, who have CdLS\nJoin us and you will run away from the race with new friends\, a sense of accomplishment and the satisfaction of making a difference. \nAs a Team CdLS member\, you are provided a guaranteed entry into the United Airlines New York City Half Marathon with the understanding that you will meet the race’s requirements to:\n• Commit to raise a minimum of $1\,000 for children with CdLS\n• Pay all fees associated with entering and participating in the race (registration\, accommodations and transportation) \nContact: TeamCdLS@CdLSUSA.org or call 800.753.2357 \nAbout the United Airlines NYC Half Marathon:\n• The United Airlines NYC Half marathon will take participants on 13.1 mile run starting in Prospect Park in Brooklyn\, over the Manhattan Bridge\, and finishing in Central Park.\n• Runners will pass by many of New York City’s most popular sights\, including Grand Army Plaza\, the United Nations\, Grand Central Terminal\, Times Square\, and Central Park.\n• Led by a talent-packed roster of American and international elites\nAdditional race information is available on the United Airline NYC Half website.
URL:https://www.cdlsusa.org/event/2019-united-airlines-nyc-half-marathon/
LOCATION:New York City
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/Team-Photo-2.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190323T140000
DTEND;TZID=UTC:20190323T170000
DTSTAMP:20260405T175538
CREATED:20190221T233219Z
LAST-MODIFIED:20190221T235420Z
UID:2107-1553349600-1553360400@www.cdlsusa.org
SUMMARY:CdLS Family Gathering
DESCRIPTION:Hosted by Fran Rissland\, mom to Riley\nFor more information contact Fran at  fran_rissland@hotmail.com
URL:https://www.cdlsusa.org/event/cdls-family-gathering/
LOCATION:Slope’s BBQ\, 200 Johnson Ferry Rd\, Atlanta\, GA\, 30328\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/02/Group-Photo.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190405
DTEND;VALUE=DATE:20190407
DTSTAMP:20260405T175538
CREATED:20181210T215248Z
LAST-MODIFIED:20190125T002158Z
UID:1880-1554422400-1554595199@www.cdlsusa.org
SUMMARY:Board of Directors Meeting
DESCRIPTION:
URL:https://www.cdlsusa.org/event/board-of-directors-meeting-2/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/12/IMG_4296.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190413
DTEND;VALUE=DATE:20190414
DTSTAMP:20260405T175538
CREATED:20181022T194406Z
LAST-MODIFIED:20190125T001922Z
UID:1324-1555113600-1555199999@www.cdlsusa.org
SUMMARY:Multidisciplinary Clinic for Adolescents and Adults
DESCRIPTION:This Foundation-managed\, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore\, MD. Foundation Medical Director Antonie Kline\, M.D.\, director of Pediatric Genetics at the Harvey Institute for Human Genetics at GBMC\, has led these free clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. Clinics occur each spring and fall and can accommodate up to eight individuals. A Family Service Coordinator from the Foundation always attends to provide support. \nParticipants receive one-to-one consultations with specialists from pediatric ophthalmology\, gynecology\, pediatric dentistry\, genetics\, gastroenterology and nutrition\, psychiatry and behavioral psychology.
URL:https://www.cdlsusa.org/event/multidisciplinary-clinic-for-adolescents-and-adults-3/
LOCATION:Harvey Institute for Human Genetics\, Greater Baltimore Medical Center\, 6701 N. Charles St.\, Suite 2326\, Baltimore\, MD\, 21204\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/ewc_CHOPCDL200908056-001569.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190424T120000
DTEND;TZID=UTC:20190424T130000
DTSTAMP:20260405T175538
CREATED:20190418T165846Z
LAST-MODIFIED:20190418T165846Z
UID:2242-1556107200-1556110800@www.cdlsusa.org
SUMMARY:Genetic Testing and CdLS Webinar
DESCRIPTION:This webinar will discuss:\n• Clinical vs genetic testing\n• Various gene mutations associated with CdLS\n• Genetic testing that is available (including prenatally)\n• What are the benefits of getting tested\n• Are there different medical approaches to treatment for the various gene mutations \nPresenters: Sarah Raible\, M.S.\, C.G.C.\, is a Genetic Counselor and Clinic Coordinator for The Center for Cornelia de Lange Syndrome and Related Diagnoses at the Children’s Hospital of Philadelphia. Sarah is a member of the Foundation’s Clinical Advisory Board (CAB).\nAlena Egense\, MGC\, CGC\, is a Pediatric and Adult Genetic Counselor at University of Maryland Medical Center in Baltimore\, MD. Her clinical activities focus on Pediatric and Adult Genetics. Alena is a member of the Foundation’s CAB and the Baltimore CdLS clinics.
URL:https://www.cdlsusa.org/event/genetic-testing-and-cdls-webinar/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/04/webinar.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190427
DTEND;VALUE=DATE:20190428
DTSTAMP:20260405T175538
CREATED:20181022T193050Z
LAST-MODIFIED:20190227T005603Z
UID:1321-1556323200-1556409599@www.cdlsusa.org
SUMMARY:Midwest Region Family Gathering
DESCRIPTION:Save the date for the Midwest Family Gathering!  Hosted by Christy and Dave Whetstone!  Join families in the midwest region to spend time together talking\, sharing stories\, laughing\, and learning from one another. The connections made between parents\, grandparents\, children\, relatives\, and professionals can last a lifetime. Who better to talk about what it’s like to experience the sleepless nights\, the never ending tests and procedures and the concerns that a diagnosis of CdLS can bring\, than another parent who also has a child with the syndrome. \nFor more information\, contact families@cdlsusa.org.
URL:https://www.cdlsusa.org/event/midwest-family-gathering/
LOCATION:Beautiful Savior Lutheran Church\, 7706 South 96th Street\, LaVista\, NE\, 68128\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/Group2-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190504T130000
DTEND;TZID=UTC:20190504T160000
DTSTAMP:20260405T175538
CREATED:20190314T231459Z
LAST-MODIFIED:20190326T174159Z
UID:2175-1556974800-1556985600@www.cdlsusa.org
SUMMARY:Midwest Region Family Gathering
DESCRIPTION:
URL:https://www.cdlsusa.org/event/midwest-region-cdls-family-gathering/
LOCATION:Bloomfield Hills Schools\, 7273 Wing Lake Road\, Bloomfield Hills\, MI\, 48301\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/03/gatheringMI.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190505
DTEND;VALUE=DATE:20190506
DTSTAMP:20260405T175538
CREATED:20181026T002937Z
LAST-MODIFIED:20181128T013755Z
UID:1610-1557014400-1557100799@www.cdlsusa.org
SUMMARY:2019 TD Five Boro Bike Tour
DESCRIPTION:Many bicyclists say that biking has changed their lives. \nTeam CdLS bicyclists say that they have changed the lives of others.\nJoin the Cornelia de Lange Syndrome (CdLS) Foundation\nat the\nTD Five Boro Bike Tour\nSunday\, May 5\, 2019 \nThe CdLS Foundation will be there with you every step of the way\, providing you with:\n• Guaranteed entry and placement in the first Start Wave\n• An official Team CdLS singlet\n• Pre-Race Luncheon\n• VIP Access to the Finish festival\, including gourmet lunch and lounge\n• Pre-Race & Post-Race Dinner\n• Team CdLS Swag Bag\n• Fundraising tools including your own personalized web page\n• Supportive teammates who may turn into life-long friends\n• The satisfaction of knowing you’re helping individuals nationwide\, who have CdLS\nJoin us and you will run away from the race with new friends\, a sense of accomplishment and the satisfaction of making a difference. \nAs a Team CdLS member\, you are provided a guaranteed entry into the TD Five Boro Bike Tour with the understanding that you will meet the race’s requirements to:\n• Commit to raise a minimum of $750 for children with CdLS\n• Pay all fees associated with entering and participating in the race (registration\, accommodations and transportation) \nContact: TeamCdLS@CdLSUSA.org or call 800.753.2357.
URL:https://www.cdlsusa.org/event/2019-td-five-boro-bike-tour/
LOCATION:New York City
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/Team-Starting-Line-3.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190509T130000
DTEND;TZID=UTC:20190509T140000
DTSTAMP:20260405T175538
CREATED:20190418T170435Z
LAST-MODIFIED:20190418T170435Z
UID:2244-1557406800-1557410400@www.cdlsusa.org
SUMMARY:How to Address Challenging Behaviors Webinar
DESCRIPTION:This webinar will discuss:\n• Self-injury\n• Impulse control\n• Destruction of property\n• Determining the appropriate consequences\n• Treatment options (ABA\, etc.) or professional resources for families \nPresenter: Julia O’Connor\, Ph.D.\, is a Clinical Psychologist and the Director of Day Treatment Services at the Neurobehavioral Unit at Kennedy Krieger Institute. Her specialty is behavior problems\, including self-injurious behavior. She volunteers her time as a behavior consultant for the Foundation’s Clinical Advisory Board (CAB) and the Baltimore CdLS clinics.
URL:https://www.cdlsusa.org/event/how-to-address-challenging-behaviors-webinar/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/04/Webinar-AdobeStock_96932096-e1518107185168.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190518T113000
DTEND;TZID=UTC:20190518T143000
DTSTAMP:20260405T175538
CREATED:20190315T182624Z
LAST-MODIFIED:20190326T174404Z
UID:2177-1558179000-1558189800@www.cdlsusa.org
SUMMARY:Northeast Region Family Gathering
DESCRIPTION:Hosted by Karen Aschenbrenner and Robert Boneberg\, parents of Alex
URL:https://www.cdlsusa.org/event/northeast-family-gathering/
LOCATION:De Hart Community Center\, 120 Burnett Ave\, Maplewood\, NJ\, 07040\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190520
DTEND;VALUE=DATE:20190521
DTSTAMP:20260405T175538
CREATED:20181026T003016Z
LAST-MODIFIED:20190429T193934Z
UID:1611-1558310400-1558396799@www.cdlsusa.org
SUMMARY:New England Charity Golf Tournament
DESCRIPTION:Join us and other families in New England to celebrate the 27th Annual CdLS Foundation New England Golf Tournament. The tournament takes place at the Ipswich Country Club in Ipswich\, MA. Participants will enjoy 18 holes of golf\, brunch\, dinner and an opportunity to win both skill and door prizes. \nRegister for the golf tournament here.
URL:https://www.cdlsusa.org/event/new-england-charity-golf-tournament/
LOCATION:Ipswich Country Club\, 148 Country Club Way\, Ipswich\, MA\, 01938\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/IMG_4306.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190613T120000
DTEND;TZID=UTC:20190613T130000
DTSTAMP:20260405T175538
CREATED:20190520T220943Z
LAST-MODIFIED:20190520T221111Z
UID:2324-1560427200-1560430800@www.cdlsusa.org
SUMMARY:Neurodevelopmental Disorders and Behavioral Management in CdLS Webinar
DESCRIPTION:This webinar will provide an overview of neurodevelopmental challenges\, including approaches to treatment\, in Cornelia de Lange syndrome (CdLS). Individuals with CdLS can be affected by a number of developmental disorders\, including intellectual disability\, autism spectrum disorder\, language disorder\, ADHD\, aggression\, repetitive self-injurious behaviors\, anxiety\, and depression. This webinar will discuss each of these domains as it relates to CdLS\, as well as strategies for pharmacological intervention.\n\nPresenter: Siddarth Srivastava\, M.D.\, Ph.D.\, Boston Children’s Hospital
URL:https://www.cdlsusa.org/event/neurodevelopmental-disorders-and-behavioral-management-in-cdls-webinar/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/04/Webinar-AdobeStock_96932096-e1518107185168.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190622T160000
DTEND;TZID=UTC:20190622T190000
DTSTAMP:20260405T175538
CREATED:20190425T174950Z
LAST-MODIFIED:20190425T174950Z
UID:2276-1561219200-1561230000@www.cdlsusa.org
SUMMARY:Northwest Illinois Family Gathering
DESCRIPTION:
URL:https://www.cdlsusa.org/event/northwest-illinois-family-gathering/
LOCATION:Burning Bush Community Center\, 1313 N. Burning Bush\, Mount Prospect\, IL\, 60056\, United States
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190727T120000
DTEND;TZID=UTC:20190727T150000
DTSTAMP:20260405T175538
CREATED:20190626T012406Z
LAST-MODIFIED:20190626T012700Z
UID:2391-1564228800-1564239600@www.cdlsusa.org
SUMMARY:Virginia Family Gathering
DESCRIPTION:Families are asked to bring a dish to share potluck style. \nEveryone is welcome! \nPlease RSVP by 7.19.19 with the number of adults/children that will be attending \nYou may email Paula Messer at pmroncales@verizon.net or Emily Muñoz at elbrummitt@gmail.com or Whitney Rinaldi\, Family Service Coordinator at the CdLS Foundation 1.800.753.2357 or Familyservice@cdlsusa.org
URL:https://www.cdlsusa.org/event/virginia-family-gathering/
LOCATION:Lambert’s Point Rec Center\, 4100 Bowdens Ferry Rd.\, Norfolk\, VA\, 23508\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/01/Savannah-Grazier-Briley-Svee-with-moms.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190731T130000
DTEND;TZID=UTC:20190731T140000
DTSTAMP:20260405T175538
CREATED:20190614T185244Z
LAST-MODIFIED:20190614T185244Z
UID:2361-1564578000-1564581600@www.cdlsusa.org
SUMMARY:Gastrointestinal (GI) Challenges: Critical Care and Treatment Approaches
DESCRIPTION:This webinar will: \n\nIdentify malrotation\nDiscuss signs of volvulus\nDiscuss bowel obstruction\nDiscuss pancreatitis\nReview treatment/care approaches to the above\n\nPresenter: Carol Potter\, MD\, Nationwide Children’s Hospital
URL:https://www.cdlsusa.org/event/gastrointestinal-gi-challenges-critical-care-and-treatment-approaches/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/04/Webinar-AdobeStock_96932096-e1518107185168.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20190817
DTEND;VALUE=DATE:20190818
DTSTAMP:20260405T175538
CREATED:20190320T003152Z
LAST-MODIFIED:20190606T234510Z
UID:2187-1566000000-1566086399@www.cdlsusa.org
SUMMARY:Missouri Family Gathering
DESCRIPTION:Hosted by the Rauba Family \nFor more information contact Lynn Audette at families@CdLSusa.org
URL:https://www.cdlsusa.org/event/missouri-family-gathering/
LOCATION:Wonderland Camp\, 18591 Miller Circle\, Rocky Mount\, MO\, 65072\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/02/Group-Photo.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20190919T120000
DTEND;TZID=UTC:20190919T130000
DTSTAMP:20260405T175538
CREATED:20190821T213911Z
LAST-MODIFIED:20190821T213943Z
UID:2491-1568894400-1568898000@www.cdlsusa.org
SUMMARY:CdLS Conference Fundraising Tips Webinar
DESCRIPTION:With the National Family Conference approaching in just under 10 months\, now is the time to plan and save. Tasha Howland\, Life Coach and mom to Peyton\, will offer tips and strategies that you may find helpful to cover your expenses for Conference. She will also offer some fun ideas to help you get started on your way to your goals! \nPresenter: Tasha Howland\, Life Coach\, Youth Coaching Institute. Tasha empowers women and families to be the best advocates for their children with special needs. One of her three children has CdLS. She is an active parent with the CdLS Foundation and co-chair for Team CdLS Baltimore. Tasha holds a Bachelor’s Degree in Political Science from Bethune Cookman University and her Project Management Professional (PMP) from the Project Management Institute in Maryland.
URL:https://www.cdlsusa.org/event/cdls-conference-fundraising-tips/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/04/Webinar-AdobeStock_96932096-e1518107185168.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20191005T110000
DTEND;TZID=UTC:20191005T150000
DTSTAMP:20260405T175538
CREATED:20190807T192855Z
LAST-MODIFIED:20190807T192855Z
UID:2464-1570273200-1570287600@www.cdlsusa.org
SUMMARY:Northwest Family Gathering
DESCRIPTION:
URL:https://www.cdlsusa.org/event/northwest-family-gathering/
LOCATION:Valley Ridge Community Center\, 4644 S 188th St\, SeaTac\, WA\, 98188\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/08/wa-gathering.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20191005T170000
DTEND;TZID=UTC:20191005T203000
DTSTAMP:20260405T175538
CREATED:20190910T224350Z
LAST-MODIFIED:20190910T224350Z
UID:2518-1570294800-1570307400@www.cdlsusa.org
SUMMARY:Brew & BBQ
DESCRIPTION:Join us for the 10th Annual Brew & BBQ for CdLS. Tickets: $35 in advance/$40 at the door Includes BBQ\, 2 beer tickets & LIVE music. Cash bar available. \nBid on our silent auction both online and LIVE! @ www.biddingowl.com/brewandbbqforcdls
URL:https://www.cdlsusa.org/event/brew-bbq/
LOCATION:Currahee Brewing Company\, 25 South Main Street\, Alpharetta\, GA\, 30009\, United States
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2019/09/BBQ-Logo-2019.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191007
DTEND;VALUE=DATE:20191008
DTSTAMP:20260405T175538
CREATED:20190607T005826Z
LAST-MODIFIED:20190607T005826Z
UID:2346-1570406400-1570492799@www.cdlsusa.org
SUMMARY:Missouri Charity Golf Tournament
DESCRIPTION:
URL:https://www.cdlsusa.org/event/missouri-charity-golf-tournament/
LOCATION:Tapawingo Golf Course\, 13001 Gary Player Dr\, St. Louis\, MO\, 63127\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/06/mo-golf.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191013
DTEND;VALUE=DATE:20191014
DTSTAMP:20260405T175538
CREATED:20181026T003122Z
LAST-MODIFIED:20181128T020039Z
UID:1612-1570924800-1571011199@www.cdlsusa.org
SUMMARY:2019 Bank of America Chicago Marathon
DESCRIPTION:Many runners say that running has changed their lives. \nTeam CdLS runners say that they have changed the lives of others.\nJoin the Cornelia de Lange Syndrome (CdLS) Foundation\nat the\nworld-renowned Bank of America Chicago Marathon\nSunday\, October 13\, 2019 \nThe CdLS Foundation will be there with you every step of the way\, providing you with:\n• Guaranteed race entry\n• Complimentary entry to the Balbo Hospitality Tent\n• An official Team CdLS singlet\n• Pre-Race & Post-Race Dinner\n• Team CdLS Swag Bag\n• Weekly training guides sent via email\n• Fundraising tools including your own personalized web page\n• Supportive teammates who may turn into life long friends\n• The satisfaction of knowing you’re helping individuals nationwide\, who have CdLS\nJoin us and you will run away from the race with new friends\, a sense of accomplishment and the satisfaction of making a difference. \nAs a Team CdLS member\, you are provided a guaranteed entry into the Bank of America Chicago Marathon with the understanding that you will meet the race’s requirements to:\n• Commit to raise a minimum of $1\,500 for children with CdLS\n• Pay all fees associated with entering and participating in the race (registration\, accommodations and transportation) \nContact: TeamCdLS@CdLSUSA.org or call 800.753.2357
URL:https://www.cdlsusa.org/event/2019-bank-of-america-chicago-marathon/
LOCATION:Chicago
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/Team-CdLS-1.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20191019
DTEND;VALUE=DATE:20191020
DTSTAMP:20260405T175538
CREATED:20181026T003239Z
LAST-MODIFIED:20190820T174449Z
UID:1614-1571443200-1571529599@www.cdlsusa.org
SUMMARY:2019 Baltimore Running Festival
DESCRIPTION:Virtual coaching\, tee shirt\, pre-race dinner with pizza and pasta and a view of beautiful Baltimore!
URL:https://www.cdlsusa.org/event/2019-baltimore-running-festival/
LOCATION:Baltimore
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/IMG_4551.jpg
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20191023T120000
DTEND;TZID=UTC:20191023T140000
DTSTAMP:20260405T175538
CREATED:20190920T200635Z
LAST-MODIFIED:20190920T200635Z
UID:2541-1571832000-1571839200@www.cdlsusa.org
SUMMARY:Retiring for 3 Webinar
DESCRIPTION:Mary Anne Ehlert will be presenting an in depth look at what Retiring for 3 means: \n\nHow much do you need and how much does your child need?\nWhen should you take Social Security?\nDoes Medicare matter enough to take your Social Security sooner?\nWhat will your child get in Social Security and when?\nWhat else changes for your child when You retire?\nDoes your pension impact your child’s benefits?
URL:https://www.cdlsusa.org/event/retiring-for-3-webinar/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2019/04/Webinar-AdobeStock_96932096-e1518107185168.jpeg
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20191102
DTEND;VALUE=DATE:20191103
DTSTAMP:20260405T175538
CREATED:20181022T194303Z
LAST-MODIFIED:20190124T235448Z
UID:1322-1572652800-1572739199@www.cdlsusa.org
SUMMARY:Multidisciplinary Clinic for Adolescents and Adults
DESCRIPTION:This Foundation-managed\, free clinic occurs twice yearly at Greater Baltimore Medical Center (GBMC) in Baltimore\, MD. Foundation Medical Director Antonie Kline\, M.D.\, director of Pediatric Genetics at the Harvey Institute for Human Genetics at GBMC\, has led these free clinics since 2001. Any individual age 12 or older with CdLS can attend with their families. Clinics occur each spring and fall and can accommodate up to eight individuals. A Family Service Coordinator from the Foundation always attends to provide support. \nParticipants receive one-to-one consultations with specialists from pediatric ophthalmology\, gynecology\, pediatric dentistry\, genetics\, gastroenterology and nutrition\, psychiatry and behavioral psychology.
URL:https://www.cdlsusa.org/event/multidisciplinary-clinic-for-adolescents-and-adults-2/
LOCATION:Harvey Institute for Human Genetics\, Greater Baltimore Medical Center\, 6701 N. Charles St.\, Suite 2326\, Baltimore\, MD\, 21204\, United States
ATTACH;FMTTYPE=image/png:https://www.cdlsusa.org/wp-content/uploads/2018/10/2018-clinic-1.png
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BEGIN:VEVENT
DTSTART;VALUE=DATE:20191103
DTEND;VALUE=DATE:20191104
DTSTAMP:20260405T175538
CREATED:20181026T003311Z
LAST-MODIFIED:20190201T030659Z
UID:1616-1572739200-1572825599@www.cdlsusa.org
SUMMARY:TCS New York City Marathon
DESCRIPTION:TEAM CdLS REGISTRATION BEGINS WEDNESDAY\, FEBRUARY 27\, 2019\nContact Kristi Larson to express your intentions\nA smile from a child with CdLS inspires Team CdLS runners to turn their love of the sport into a passion to help raise funds for the hundreds of individuals that have this little- known syndrome. There is no cure. As a Team CdLS member\, you are provided a guaranteed entry into the TCS New York City Marathon with the understanding that you will meet the race’s requirements to: \n\nCommit to raise a minimum of $2\,500 for individuals with CdLS\nPay all fees associated with entering and participating in the race (registration\, accommodations and transportation)\n\n  \nTeam CdLS amenities include: \n\nGuaranteed race entry\nWeekly training guides sent via email\nFundraising tools including your own personalized Web page through CrowdRise.com\nDedicated staff to provide guidance and Team CdLS branded materials\nTeam CdLS singlet\nPre-Race Luncheon\nRace day support\nTeam CdLS swag bag\nThe satisfaction that you have helped individuals with CdLS and their families\n\nTo register for the TCS New York City Marathon as a Team CdLS runner\, email Kristi or call 800-753-2357. Team CdLS also welcomes runners who entered through the lottery or otherwise qualified. \n2019 TCS New York City Marathon Processing and Entry Fees: \n\nU.S. residents (those who live in the 50 United States or the District of Columbia)\nNYRR members: US $255\nNon-members: US $295\nNon-U.S. residents (including Puerto Rico and other U.S. territories): US $358\n\nEntry fees will be charged upon acceptance. Once you have been accepted\, your entry fees are non-transferable under any and all circumstances\, and are also non-refundable under any and all circumstances except in the event of cancellation of the marathon. \nIncluded in the entry fee\, provided by the Foundation \nTCS New York City Marathon: \n\nEntry to the 2019 TCS New York City Marathon (including fluid/fueling stations\, medical support\, entertainment\, bag-check handling\,* security\, and more)\nRunner “goody bag” including official New Balance technical shirt and official TCS New York City Marathon Program magazine.\nOfficial transportation to the start from Midtown Manhattan\, Lower Manhattan\, or the Meadowlands Sports Complex (New Jersey)**\nStart festival\, including breakfast and entertainment.\nFinisher materials: medal\, food\, beverages\, Heatsheet™\, official results magazine\n\n  \nInterested in supporting the team without getting dirty? Give a one-time donation. Click here and select Team CdLS in the donation type. Make sure you mention NYC Marathon on the form.
URL:https://www.cdlsusa.org/event/tcs-new-york-city-marathon-2/
LOCATION:New York City
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BEGIN:VEVENT
DTSTART;TZID=UTC:20200111T080000
DTEND;TZID=UTC:20200111T120000
DTSTAMP:20260405T175538
CREATED:20191213T191414Z
LAST-MODIFIED:20191213T191730Z
UID:2690-1578729600-1578744000@www.cdlsusa.org
SUMMARY:CdLS Clinic at St. Louis Children’s Hospital
DESCRIPTION:St. Louis Children’s Hospital in St. Louis\, Missouri will host their second Cornelia de Lange Syndrome clinic.\n\nThe specialties in attendance will include the following: genetics\, neurology\, ophthalmology\, audiology/ear\, nose and throat\, and psychology.\nFor further details\, contact Whitney Rinaldi\, BSW\, at familyservice@CdLSusa.org
URL:https://www.cdlsusa.org/event/cdls-clinic-at-st-louis-childrens-hospital/
LOCATION:St. Louis Children’s Hospital\, 1 Children's Place\, St. Louis\, MO\, 63127\, United States
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/stlouis.jpg
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BEGIN:VEVENT
DTSTART;TZID=UTC:20200311T080000
DTEND;TZID=UTC:20200311T120000
DTSTAMP:20260405T175538
CREATED:20190917T233926Z
LAST-MODIFIED:20190917T234138Z
UID:2528-1583913600-1583928000@www.cdlsusa.org
SUMMARY:CdLS Clinic at Shriner's Hospital
DESCRIPTION:Shriners Hospital for Children-Salt Lake City\, Utah will have their annual Cornelia de Lange Syndrome Clinic March 11\, 2020 from 8 am – 12 pm with a range of specialists available just for children with CdLS (new patients must be age 18 and younger). The specialties will include the following: pediatric orthopeadics\, eyes ears nose and throat\, gastrointestinal\, pediatrics\, neurology\, genetics\, the orthotics and prosthetic lab\, and physical and occupational therapy services. \nShriners Hospital for Children-Salt Lake City has been helping children with orthopaedic needs regardless of ability to pay since 1925. If you are interested in this clinic please contact Lynn Audette\, L.M.S.W.\, Family Service Coordinator at 1-800-223-8355 or families@CdLSusa.org.
URL:https://www.cdlsusa.org/event/cdls-clinic-at-shriners-hospital/
ATTACH;FMTTYPE=image/jpeg:https://www.cdlsusa.org/wp-content/uploads/2018/10/shriners.jpg
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